‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults

Abstract Background In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA). Design and participants We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis. Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data. Results Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment. Conclusions The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.


| INTRODUC TI ON
Aphasia is an acquired language disorder, most commonly occurring poststroke, that 'masks a person's inherent competence, and most dramatically affects conversational interaction (talking and understanding), as well as the ability to read and write'. 1,2 Aphasia has far-reaching psychosocial consequences for quality of life, mental health, social networks, relationships, return to work, access to support and social participation. [3][4][5][6][7][8][9][10][11][12][13][14][15][16] There is a growing research focus on supporting people with post-stroke aphasia (PWA) to achieve participation outcomes in addition to impairmentfocused rehabilitation approaches. 17,18 Such interventions may include raising aphasia awareness, improving communicative accessibility, targeting social inclusion, communication partner training and connecting PWA with opportunities for authentic, meaningful social participation. [19][20][21][22][23] A recent qualitative evidence synthesis of 31 articles reporting the perspectives of 350+ PWA highlighted the importance of social participation for living well with aphasia (LWA). 24 The findings were limited in that they were drawn from studies examining a diverse range of topics in addition to LWA. Shortcomings in the literature were also highlighted including a lack of public and patient involvement of PWA in aphasia research, despite empirical evidence of successful participatory research in the context of aphasia. [25][26][27][28] A little under half of participants (42%) in the included papers were clearly documented as working age. Aphasia brings unique, inter-connected consequences for social participation for working aged adults who will live with chronic aphasia for a longer number of years 29,30 and so it is particularly important to increase understanding of supporting this age group. This is especially salient in the context of the growing incidence of stroke in working aged people [31][32][33] and evidence that access to stroke support is front-loaded. [34][35][36][37][38][39][40][41][42][43] We therefore aimed to address relative under-representation of the perspectives of working aged PWA, including those with severe aphasia, towards social participation and LWA. We designed a qualitative interview study with input from a Public and Patient Involvement (PPI) aphasia advisory group, which generated a rich data set about multiple aspects of LWA. This paper focuses on the relevance of social participation for LWA.

| Qualitative approach and research paradigm
The study design was qualitative, semi-structured, in-depth interviews. 44 Our approach was framed by Critical Realism, as detailed previously. 45 We have followed the Standards for Reporting Qualitative Research (SRQR) 46 (Supplementary file 1).

| Researcher characteristics and reflexivity
The multi-disciplinary team included expertise in aphasia, PPI, health psychology and primary care and four PPI collaborators (3 women, 1 man) of working age living with post-stroke aphasia for 3-30 years.

| Sampling strategy
We circulated recruitment information (Supplementary file 2) to Speech and Language Therapists (SLTs) in the Health Service Executive and various third-sector support organizations (ABII, Headway, Aphasia Ireland, Croí, IHF), who identified potential participants within their organization. The sampling parameters were working aged adults (18-65 years) with post-stroke aphasia, a minimum of 1 year post-onset. To focus on the experiences of PWA, we excluded people with severe cognitive or hearing impairment.
We used maximal variation sampling to maximize diversity by age, sex, location, referring organization, severity of aphasia, years since stroke and living situation. 47 All eligible and interested participants presenting within a 5-month window in 2019 were recruited to the study (to enable the project to be completed within the allocated time available). However, participant diversity was actively monitored throughout.
At an initial meeting, the first author obtained informed consent by reading the information sheet and consent form aloud and ensuring that participants had comprehended each element. We also administered subtests of the Boston Diagnostic Aphasia Exam, 48 the Western Aphasia Battery -Revised 49 and the Comprehensive Aphasia Test 50 to determine aphasia severity and communication support needs. Each PWA could invite a significant other who would attend the interview to help support their communication. 13 This option was explained and explored with the participant with aphasia.
Written informed consent was subsequently obtained from significant others at the time of interview.

| Data collection
Interviews were conducted by the first author (trained SLT) either in participant homes or third-sector support organizations. Interviews were conducted at least 2 days after initial meeting except for 3 participants, for whom fatigue was not an issue, who were interviewed at initial meeting. Interview length averaged 96 min (range 50-128).
Interviews were audio and video recorded. The researcher monitored for signs of fatigue, emotional distress and breaks were taken whenever required. 51,52 The topic guide published previously 45 was developed and piloted with PPI advisors in practice interviews. The topic guide facilitated semi-structured interviews without fixed sequencing or wording and using non-directed open questions where possible, but allowing for scaffolding where required, including binary choice alternatives and yes/no questions. Scaffolding also included providing examples of what other PWA had said in early interviews and in PPI meetings. 28,53 A description of the strategies we used to support PWA to participate in the interviews is published elsewhere. 45 These included suggestions made by and piloted with our PPI contributors to ensure that significant others, when present, did not 'speak for' participants with aphasia. 52 These included, for example, addressing questions in the first instance to the participant with aphasia by name, and verifying all significant other contributions with the participant with aphasia.

| Data processing and analysis
The first author transcribed and imported data to NVivo11 for reflexive thematic analysis. [54][55][56][57] Transcripts were read in detail and initial observations and insights were noted. Initial coding involved a flexible deductive process, described elsewhere, 45

| Techniques to enhance trustworthiness
The first author met the second and final authors after coding 4 transcripts to discuss analytical method, and with the final author throughout analysis for in-depth interrogation of the analytical insights. Together with PPI contributors, this collaborative approach helped provide 'a richer more nuanced reading of the data' 56 (p. 594). A detailed, reflexive audit trail was maintained.

| RE SULTS
Social participation as relevant to living well with aphasia spanned five themes ( Figure 1): Relationships and roles; Social support; Peer network; Aphasia awareness; and Employment and training.
Each participant with aphasia was assigned a random identifier from P01-P14 (corresponding spouses are identified as S01, etc) (see Table 1).

| Relationships and roles
This theme describes the importance of relationships and relationship roles in terms of LWA.

| Accepted by others
Participants described how family and friends did not treat them differently and were supportive conversation partners, often without formal aphasia information or training.

| Social support
This theme describes social support and participants' mixed feelings about support.

| Practical support and encouragement
Family and friends were a source of encouragement and practical support (eg with transport, shopping), which helped participation, autonomy and confidence.

| Peer network
This theme describes participant perspectives on being part of a post-stroke peer network.

| Somewhere to go is most important
For many participants, third-sector support organizations provided 'a base', somewhere to go and to meet others and to develop structure and routine, particularly important after job loss. This is illustrated by P06, who valued full-time employment prior to his stroke, 'it's somewhere to go is most important… That it kills a few hours in the daytime. And I'm not sitting around the house'.
Participants had variable access to groups and training courses for people with brain injury and/or communication impairment.
When available, these included SLT-led communication groups (either aphasia-specific or for people with communication impairment more generally), stroke support clubs in the community and third-sector support organizations for people with brain injury. P09 wanted stroke funding to be separated from cardiovascular health. He described his involvement in organizing an aphasia conference with his local SLT-led aphasia group. P09 felt that this conference, which had been attended by a government minister, had given a united voice and information to people with more severe aphasia in his aphasia group.
P13 supported local SLTs in facilitating aphasia conversation groups and facilitated discussions between PWA and families as she was able to see both sides. She was also involved in raising aphasia awareness in the community and politically.
P13: I never heard the word 'aphasia' before this…I just don't think there is anything out there for that…we went to the Dáil (Irish house of government) …And we've gone and talked to the TD's (Teachtaí Dála, Irish parliament members) in way to try and do that. … so, there is a little bit but it's not enough…

| Aphasia awareness
This theme references perspectives towards the need for increased aphasia awareness in the community and their involvement in awareness-raising activities. I: going about your business, going into the shops … you don't feel that your aphasia gets in the way?

P14: No!
P05 pointed out that you encounter friendly and unfriendly people regardless of aphasia: 'Some of them are grand, some of them aren't.
But then if you meet people like that anyway, some people are great, some are -(laughs)…'.

| Employment and training
This theme describes perspectives towards employment issues.

| End of job and occupation
Most PWA spoke about employment, which had been negatively af- P06: I was always used to that, I was always used to working…I wanted to go back to work after 2 or 3 days.

| Return to work-levers and barriers
Perceived barriers in the workplace included a lack of occupational support and equipment and the impact of stress and fatigue. P08

| Education and training
Some participants accessed (or planned) vocational training and further education. P04 linked his instructor's support with his success: 'He was very encouraging'.

| D ISCUSS I ON
We interviewed working aged PWA, including those with severe aphasia, to explore what supports LWA. This paper focuses on findings relating to social participation and its relevance for LWA. The findings add to a small body of literature examining social participation issues for working aged PWA [28][29][30] and demonstrate how meaningful, interesting social participation for LWA is necessarily individually de-

| Working aged parents with aphasia may have unique support needs
The findings add to a small body of research examining the consequences of aphasia on parenting and children. 12,59 The data illustrate numerous parenting role changes including changed communication with children, role reversal due to children taking on additional household and caring duties, and some participants having to reassert their authority as parent. These resonate with previous descriptions of problems surfacing many years post-stroke as children approach adolescence, 12 changes to the distribution of parenting duties and decisions between PWA and partners, 61,62 reduced ability to do things with children, 59 concerns over maintaining custody 63 and children rejecting the parent with aphasia. 12 The findings highlight a need for further research examining the impact on parenting with aphasia and the support needs of younger parents with aphasia.

| Working aged PWA needs opportunities for paid employment that allows for meaningful contribution and progression
Most participants discussed employment and financial issues, and many had experienced voluntary or involuntary redundancy. Parr previously highlighted how the impact of aphasia on participation is inter-connected with finances and employment. 12 We found contrasting experiences of participants who were no longer working.

| The aphasia community/peer network does not suit all working aged PWA
The data extend knowledge of the diverse, often opposing experiences and preferences of individual working aged participants.
Previous literature has perhaps not emphasized enough the huge differences in the degree to which PWA want to be involved in the aphasia world. Though some working aged PWA greatly enjoyed various aphasia / stroke groups and training courses, these did not interest everybody. This resonates with earlier qualitative studies in which some PWA preferred non-aphasia specific and/or communitybased interest groups. 62,65,66 The findings thus support prior recommendations for wider access to general interest, non-disability specific groups, 67

| Methodological critique and limitations
Some potential methodological limitations have been highlighted in an earlier paper. 45

| Strengths and clinical implications
This study makes a unique contribution by extending our understanding of how best to promote meaningful social participation and personally defined recovery and living well for working aged adults living with post-stroke aphasia. The findings are generated using a rigorous research design and in collaboration with the PPI aphasia advisory group. Our methodology thus aimed to maximize validity and transferability of the findings, which may have relevance for PWA in other countries, and indeed other patient groups including people with stroke and / or communication impairment from other aetiologies.
The findings underscore how social support and individually defined social participation are critical for working aged adults to live well with aphasia. It is crucial that support for PWA is extended to the support networks of PWA, and that social participation outcomes at all stages of recovery are explicitly targeted as part of health policy and stroke and SLT practice. Such support must be designed and evaluated in collaboration with working aged PWA to better meet the diverse and unique needs of a younger population in the context of living a longer number of years with stroke. Support needs may include, for example, support with parenting, employment, training and education in the context of aphasia, and self-management support to access a wide and diverse social network, including via digital technology.

| CON CLUS ION
We interviewed working aged PWA, including those with severe aphasia, to explore what has or would help them to live well. This

ACK N OWLED G EM ENTS
We gratefully acknowledge the following supporters and enablers, without whom this project would not have been possible: our PPI aphasia advisory group; the referring Speech and Language Therapists and third-sector support organizations; and the interview participants.

CO N FLI C T O F I NTE R E S T
The authors declare no competing interests.

DATA AVA I L A B I L I T Y S TAT E M E N T
This qualitative interview study generated rich, personal information about participants. It is not possible to make these data available in such a way that would protect the anonymity of participants required for research ethical approval.